A cohort study of the impact of COVID‐19 on the quality of life of people newly diagnosed with dementia and their family carers

Abstract Introduction COVID‐19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods In a UK cohort study, pre‐ and post‐pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post‐diagnostic care.


INTRODUCTION
Quality of life (QoL) is a complex, multidimensional construct that is widely used to examine people's experiences of living with dementia. 1,2 The World Health Organization defines it as the "evaluation by an individual of their position in life, assessed in context of one's culture, values, goals, expectations, standards, and concerns" (p. 1405). 3 Research has highlighted a range of modifiable components that differ for people with dementia 2,4,5 and family carers, 1,6 and can enhance or hinder their QoL. These include demographic (e.g., spouse/non-spouse carer status and living situation), personal (e.g., coping strategies), social (e.g., familial networks), and contextual factors (e.g., ability to contribute to their community). Consequently, anything that may impede the access to, and quality of, these resources is likely to result in a worsening of QoL for these populations.
In late 2019, a new coronavirus (COVID-19) emerged causing global disruption as countries introduced public health strategies to attempt to control the spread of infection. Since March 2020, the UK has imposed a series of measures including national and regional lockdowns, prolonged periods of physical/social distancing, reduced access to local services and community facilities, "shielding" for vulnerable groups, and travel restrictions. The pandemic has had particular negative effects on people with dementia and their carers. [7][8][9] People with dementia are at high risk of infection and death, 10,11 accounting for 25% to 31% of all UK COVID-19-related deaths. 12 In the United States people with dementia were at significantly increased risk for COVID- 19, and this was particularly the case for Black people and those with vascular dementia. 13 This is driven by the association of dementia with age and biological vulnerability, and the social vulnerability of the high prevalence of people with dementia living in care homes where mortality from COVID-19 has been particularly high, exacerbated in the UK by the practice of discharging infected individuals from hospitals to care homes. 14 People with dementia also have difficulties in remembering and understanding restrictions and precautions 15,16 and may find government guidance inaccessible and difficult to follow, particularly without the support of a carer. 17 COVID-19 governmental public health strategies have restricted socialization and reduced access to health and social care services and community activities, potentially affecting mental health and well-being. 18,19 Researchers have described the "shrinking worlds" of some people with dementia during the pandemic, finding themselves unable to engage in meaningful activities and social interac-tion that had previously provided a sense of purpose, identity, and social connectedness. 17 However, they also noted that for some the "lockdown bubble" provided a break from the busyness of the outside world, where they could feel safer. Through the pandemic carers in general (i.e., not just those caring for people with dementia) have reported higher levels of depressive symptoms and anxiety than noncarers 20 and increasing levels of depression. 21 Researchers, examining the impact of social support service closures on the mental wellbeing of a combined sample of older people, people with dementia, and carers during the first 3 months of the pandemic, found levels of selfreported anxiety dropped through this period, but depression rose.
Self-reported QoL (measured by Warwick-Edinburgh Mental Wellbeing Scale, which is not dementia-specific) increased for people with dementia and older adults. 22 These early studies paint a mixed picture of the impact of the pandemic and subsequent restrictions on the QoL of people with dementia and their carers. To date, most studies have been qualitative or used cross-sectional surveys, relying on subjective retrospective ratings, with few studies comparing findings in the pandemic to pre-pandemic measures. 23 One small Spanish study compared carer-reported neuropsychiatric symptoms of 20 people with mild Alzheimer's disease (AD) using data collected 1 month before lockdown and then reevaluating them after 5 weeks of lockdown. 24 The findings showed increases in apathy, agitation, and aberrant motor behavior for their participants with dementia, although no significant decreases were reported in well-being (as measured by carer proxy reports on the EQ-5D). This study (DETERMIND-C19) aimed to address this evidence gap by examining QoL in a cohort of people newly diagnosed with dementia who were recruited into the DETERMIND program in the months before the first COVID-19 lockdown. 25 The cohort was comprehensively assessed prior to the pandemic, providing the opportunity to conduct an in-pandemic assessment allowing for the investigation of how participants were affected. We hypothesized that the impact of the COVID-19 pandemic would be to decrease QoL for people with dementia and their family carers.

Procedure
Baseline DETERMIND interviews were completed face-to-face and follow-up DETERMIND-C19 interviews were conducted between July and October 2020 by telephone (because face-to-face visits were not permitted due to government restrictions) with people with dementia and/or their carers. Data were collected on topics including: QoL, physical and mental health, service use, social connections, and perception of the pandemic.
Prior to all telephone interviews, participants were sent prompt cards, outlining response scales for each of the questionnaires, and encouraged to use them during data collection. It was envisaged that this would ameliorate some of the challenges associated with working memory that may be encountered by people with dementia and so enhance the validity of the data obtained.

Measures
We measured self-rated and carer-rated QoL of people with dementia using the 28-

Analysis
Latent growth curve modeling examined the level and change in QoL and its associations with characteristics of the carer and person with dementia. In a latent growth curve model, 32 random effects are used to capture individual differences and fixed effects to estimate the average growth of the entire sample. Analyses were carried out with Mplus 8. 33 As there were only two time points, a simple linear change (slope) in QoL could be estimated with the initial level (intercept). Participant characteristics collected at baseline were included as potential predictors of the level and change in QoL. As there was very little change in the characteristics between the baseline and C19 interview, the baseline value was used. MMSE was only available at baseline. Number of hours of care showed some individual change, but the sensitivity analysis using it time-varying suggested that the baseline value was a stronger predictor of QoL in the C19 interview than the concurrent one. Therefore, we used only the baseline number of hours of care. Memory clinic contacts were used as a time-varying predictor.
The sample size was too small to include all characteristics in the same model. Therefore, we fitted the models first for each type of characteristic separately (bivariate models) to identify those associated with the level or change in QoL. We then included the bivariate predictors that were associated with either interact or slope of QoL in a multivariable model. All multivariable models were adjusted for age, sex, and the number of months between the baseline and C19 interview. The fit of the model was assessed by Chi-square analysis (a P-value > .05 recommended as a good fit), but as this is sensitive to sample size (Chi-

Participants
Interviews were conducted between July and October 2020; of the  Table 2 presents distributions in whole sample of people with dementia that included 52 individuals who did not have a carer or where the carer did not participate in the study (and were therefore not included in Table 1). There were no statistically significant differences in participants' characteristics between the subsample completing the C19 interview and the baseline sample (P > .05 for Chi-  Table 3).
In terms of performance, C-DEMQOL showed good internal consis-  (Tables 1 and 2). In terms of interpreting these changes in QoL scores, there is no established minimal important difference (MID) for C-DEMQOL, but for the DEMQOL system more generally MID statistics ranged between 2 and 6 points. 37

Change in QoL between baseline and DETERMIND-C19 interview
In the unadjusted model for carers, the initial level (intercept) of QoL

Association of characteristics of the carer and person with dementia with change in QoL
There was substantial individual variance around the change in carer QoL. To investigate if participants' characteristics could explain these changes, linear regressions using the intercept and slope parameters as outcomes were carried out as part of latent growth curve estimation.
First, bivariate models with one predictor at a time were fitted. Then those predictors that were associated with either the intercept or slope were included in a multivariable model. All models fitted the data well (CFI > 0.95, RMSEA < 0.05, SRMR < 0.05).
Higher levels of cognitive impairment (lower MMSE scores) of the person with dementia were associated with greater decline in carer QoL (Table 5 and Figure 1). Similarly, higher area deprivation (lower IMD decile) was associated with greater decline in carer QoL (Table 5 and  ns = non-significant. *P < .05; **P < .01; ***P < .001. bivariate analysis (carers who were older, homeowners, and had lower education showed higher QoL), and became non-significant in the multivariable model ( Table 5).

All participants Those present in both waves
The bivariate and multivariable analyses revealed few relationships between the person with dementia's change in QoL and their characteristics (Tables S1 and S2 in supporting information). None of the characteristics were associated with the change in DEMQOL-Proxy in the fully adjusted model (Table S1). Longer time since dementia diagnosis, receiving Attendance Allowance, and carer's higher educational level were associated with lower DEMQOL-Proxy scores in the multivariable model (Table S1). Longer time since dementia diagnosis was associated with increased DEMQOL-Proxy scores while carer co-residence was associated with higher and receiving Disability Allowance with lower QoL in the bivariate analysis only. Non-white ethnicity and receiving Disability Living Allowance were associated with decrease in DEMQOL in the multivariable model (Table S2). Homeownership, and shorter time since dementia diagnosis and time between the baseline and C19 interviews were associated with higher baseline DEMQOL scores in the multivariable model.      38 However, these data were collected between July and October 2020, during the UK summer and a partial lifting of the restrictions. It is possible that participants had come to terms with the initial shock of the pandemic and had begun to develop mechanisms to counter any potentially adverse impacts. Our findings fit with reports that QoL may have been maintained 24 or even have increased for some with dementia. 22 It is possible that, as in other research, 17 having been recently diagnosed with dementia, our participants benefitted from the lockdown bubble and shrinking of their worlds as a means to come to terms with their dementia diagnosis in a safe environment. We will explore this in the qualitative component of DETERMIND-C19. Experiences are likely to have been very different for those with dementia in care homes.

DISCUSSION
Our findings for carers are of concern and in line with reports of an increase in depressive symptoms and anxiety in carers generally 20,21 and in depression among carers of people with dementia specifically as a consequence of COVID-19 and the public health restrictions. 22 During the pandemic, the QoL of the DETERMIND carers decreased. This was measured using an instrument specifically developed for use with family carers of people with dementia that quantifies how caring as a whole, with its positive and negative aspects, has affected the carer.
Those carers who were supporting people with higher levels of cognitive impairment experienced a greater decline in QoL in the pandemic.
Difficulties accessing formal health and social care services, together with limits on community activities and restricted informal social networks, will have placed a high level of strain on these carers. They may also have opted against (re)employing paid home care or less formal paid and unpaid arrangements for fear that introducing others into their household would increase their risk of infection; thereby resulting in a need for them to provide additional care at a cost to their own well-being. 39 Those carers living in areas of high deprivation were most affected.
This demonstrates that there are social determinants of outcomes for carers in addition to the influence of characteristics of those for whom they care. The variation among the three recruitment sites is striking and offers the hope that these harms to carers might be prevented or reversed by appropriate service provision. Part of the variation among sites was due to differences in deprivation, but more was associated with service delivery. We found that support from memory services There are important limitations to this study. The first is inherent in the DETERMIND cohort that was designed to investigate care inequalities and so includes variation in characteristics that might be associated with variations in care such as ethnicity, social class, and region. It is therefore not a representative sample of the UK population of people with dementia. 25

CONCLUSIONS
Our data show that the major QoL impacts of the pandemic have been The views and opinions expressed here are those of the authors and do not necessarily reflect those of UKRI, the ESRC, or NIHR. We thank all the people with dementia and carers that gave their time to be part of this study. Banerjee subsequent versions of this paper with input and revisions by all authors, who reviewed and approved the final submitted paper.

DATA AVAILABILTY STATEMENT
Deidentified participant data will be available with investigator support from 9 months after publication of the last DETERMIND-C19 paper via sube.banerjee@plymouth.ac.uk by researchers whose proposed use of the data has been approved by the DETERMIND Programme Management Board for analyses that have been approved. The study protocol will be available as a supporting document.